Craniosynostosis: Our Cranio Journey

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My daughter was born with a craniofacial defect called Unicoronal Craniosynostosis. Basically, when babies are in the womb, their skull is made up of five separate bones that are disconnected from each other, this allows these plates of the skull to overlap each other during vaginal delivery. The plates go back into place after birth and as the child gets older, the plates begin to fuse together to create the solid skull that you and I have. But in my daughter’s case, and many other cranio babies, the two plates on the right side of her skull were already fused together while she was still in my tummy.

My daughter was born in February of 2017 and we didn’t make this discovery for several months after her birth. This was due to large amounts of swelling on her head after a long, rough delivery. She was stuck in my birthing canal for four hours while I pushed, trying to get her to crown. After all that trauma, she had significant amounts of swelling on the top of her head and on her forehead.

So, in June of 2017, we were at the pediatrician having a four month check up when I asked the doctor about something my husband pointed out to me. We used to call her peep eye because she had a tendency to hold her left eye closed and peep out of her right eye. The doctor replied at almost the same time that she was curious about a little ridge she was seeing along the right side of my daughter’s head, that seemed to come from the top of her head, down to behind her right ear. We were sent to the children’s hospital to have a CT scan done immediately. Luckily, my mom is a radiology technologist at the children’s hospital. One of my mom’s coworkers ran the scan and it was concluded that my daughter had Craniosynostosis.

We were referred to Children’s of Alabama at Birmingham. We live in Mobile, Alabama, which is one of the southernmost counties in Alabama. Our trip to Children’s at Birmingham was over four hours and over 250 miles long. My baby went through a five hour surgery and spent almost a whole week in the hospital.

That surgery was done on November 30, 2017. Today is December 20, 2017 and she still has her incision visible, with lots and lots of stitches across the top of her head in a zig zag pattern from one ear to the other. Her head was shaved for the procedure and she is still just a little peach fuzzy so everything is still very visible but she is healing very well.

Today, almost a month after the actual surgery, was probably the hardest day so far. I had some grocery shopping to do and wanted to pick up a few last minute Christmas presents for a family Christmas party this week. This was not the first time I have taken her out in public since the surgery, but it was the first time anyone has asked me about my baby’s head.

There were children who asked me, “What’s wrong with her head?” This didn’t bother me as I know children are innocent and the kid who asked me this meant no harm by it, she was just confused as I’m sure she’d never seen someone with their head sliced open and sewed up before. Especially not a little baby. I saw this as an educational opportunity. I told the little girl, in very simple terms, that my baby’s head wasn’t growing right and the doctors had to fix it. I could see the shock and embarrassment in the grandmother’s face when the little girl asked me, and the relief when I explained so calmly. I feel this was a good educational experience for the little girl because she learned something new about babies and how their heads grow. And the grandma learned that it’s okay for kids to ask these questions in some circumstances, but perhaps we should teach our children that some people may look or seem different than what we’re used to and that is not a bad thing. There are good ways to approach this and acting scared or shocked isn’t going to be the best.

Some of the adults who asked were very polite about it. They would smile and talk to her as she sat in the seat of the shopping cart, then turn to me with a mix of concern and curiosity, and ask me “Did she have surgery recently?”, or “What was her operation for?”, etc. To this, I simply explained her condition and what was done to correct it. Other adults were not so polite. Some grown adults were staring, gawking at her, asking me, “What’s wrong with her?!” To which I replied, “Nothing is wrong with her. She’s perfect.” Others just stared and followed her with their eyes like she was something strange.

There was one moment where I nearly cried, ditched my cart and dashed out to the car. I pulled myself together and braved the rest of my trip. There was one moment where I thought to myself, ‘If only she didn’t hate hats! I’d put a hat on her head so nobody could see her scar, but she always throws her hats off.’ I knew that thought was silly just as soon as it ran through my mind. Who am I to hide my daughter’s story from the world? This is not even my body and I’m wishing for ways to cover it up and keep it hidden from everyone’s eyes. I’m not ashamed of my daughter’s scar, and I’m definitely not gonna act like it! There was another moment where I thought to myself, ‘If one more person asks me about her dang head I’m gonna lose it!’ But that was never gonna happen either.

Today was a head rush of emotion. From grown people who should know better and little kids who would know better if their parents had taught them. I experienced everything from embarrassment to anger. No parent should have to feel that way in a grocery store because of people asking about and staring at their child.

My aim is to educate as many people as possible about Craniosynostosis as possible. Everyone know what Down Syndrome is, everyone knows what Alzheimer’s is, but I’m sure there was a time when knowledge about these conditions wasn’t very common. But over the years, people have been made aware and now these people are not treated unlike everyone else in the world. I hope to spread the word about Craniosynostosis in such a way that it becomes common knowledge and maybe I can save a parent in the future from the emotional whirl wind that comes with taking your post-op cranio baby in public. Because no one should have to feel that way and they can’t just hide at home for weeks or months until the hair grows back to cover the scar.

Let’s spread awareness. Let’s spread compassion. Let’s spread love.